Category: Things I Learned the Hard Way

I am a Pediatric Stroke Survivor. Today marks the 13th Anniversary of my left pontine ischemic stroke (I.e., brain stem stroke) which resulted in right side paralysis. Science and medicine can’t explain why it happened nor my 99% recovery, but the Grace of God and His mysterious plan for my life explains the rest.

Life has thrown me curveballs that irreversibly changed the course of my life. Having a stroke at 15 years old during my first two weeks of high school certainly caused the ebb and flow of my life to alter.

Some of My Stroked Lessons:

1. Life is beautiful in all its forms and functions.

2. A person’s utility doesn’t make them lovable or not. A person is lovable because they are human.

3. When you loose control of your utilitarian purpose in life and become completely dependent on the goodwill and charity of others, develop a deep sense of purpose not based on external factors.

4. Develop a good, clean sense of humor. Learn to laugh at yourself and life situations. Not only is humor therapeutic but an invaluable coping mechanism.

5. You can either fight your mortality or not. Either way you’re still mortal.

6. Medicine = people helping people to help people. Not perfect people perfecting people to perfect people.

7. Be kind to yourself and others. Suffering a traumatic brain injury will close doors but even if a window doesn’t open look for a transom window. A little light is better than no light.

An Anniversary Prayer:

Dear Heavenly Father, thank you for the gift of life and the gift of healing. Grant increased healing of body, mind, and soul to those that suffer. Grant them peace. Grant their caregivers’ wisdom, quiet strenght, and compassion. Allow them to experience a transcendent hope. Help me to always be grateful, to cultivate joy, to suffer with purpose, to persevere through adversity, to know my limits, and rely more fully on your love and grace. May my life reflect your light to others.

“Pride goes before disaster, and a haughty spirit before a fall. It is better to be humble with the poor than to share plunder with the proud.” ~ Proverbs 16: 18-19

Other than the theme of love the theme of pride dominates the majority of literature- Hubris. I learned acutely this week: Pride has no business in an intimate relationship.

St. Augustine wrote, “It was pride that changes angels into devils; it is humility that makes men as angels.” So very true. Pride enslaved us to sin and death. Humility freed us from sin and death.

Within a loving, intimate relationship pride ruins relationships and wrecks havoc. Pride destroys all other virtues and even other vices. Pride denies sin. Pride ultimately means an over-inflated, misplaced self reliance and rejection of our reliance on Our heavenly Father- Our Creator. Pride is like giving God the middle finger. We puff up like a petty, pouffy self-absorbed grouse. But pride makes us feel good or justified or superior. In reality, we reject God, turn ourselves into mini-gods, and reject the people we claim to love. We’re too busy loving ourselves.

Pride manifests itself in many ways within a relationship: lack of communication, resentment, abuse and control, sexual perversion like pornography or masturbation, holding a grudge, inability to think of others, lying, omitting or twisting the truth, blaming others, whining, etc.

“For pride is spiritual cancer: it eats up the very possibility of live, or contentment, or even common sense.” — C.S. Lewis, Mere Christianity.

Pride isn’t the same concept as being proud. We can delight in our gifts, talents, and accomplishments barring maintaining healthy gratitude to Our Creator who bestowed us with the capacity. Pride doesn’t mean having unhealthy boundaries, being a doormat, excusing bad behavior, or refusing to cultivate a conscience that delineates between good and evil. Having convictions or a moral compass is not automatically pride.

Pride prevents reconciliation, humility, forgiveness, freedom, and virtue. Pride tramples faith, hope, and charity (love.) Pride enslaves a person to their distortion of self reliance and prevents freedom in this life and the next. Pride snuffs out joy. Pride destroys peace. Pride prevents communion and union.

“The greatest misery does not stop Me from uniting Myself to a soul, but where there is pride, I am not there.” –St. Faustina, Divine Mercy in my Soul (1563)

I’m guilty of pride. Pride that hurts others and myself. Daily I struggle with occasions of sin and sin prompted by pride. I struggle to keep prideful behavior at bay within an intimate relationship. Pride can be sneaky too manifesting itself in unlikely manners and places.

What is the antidote to pride? Humility. Not faux humility. Authentic humility. Part 2 of this post will be an exploration of humility.

“Humility is not thinking less of yourself, but thinking of yourself less.” — C.S. Lewis

As a child, I couldn’t have imagined the complexities and complications of my twenty-seven years of earthly existence. I had a very active and developed imagination too! As the Jesuits would say, “Life is a Journey.” After eight plus years of Jesuit education, you master the reflective, meditative tone while reminescing on the journey of life and God’s will in one’s life. Many times on this journey, I feel that I slipped into the Space Between.

Not only the title of an iconic Dave Matthews Band song, but a literary explanation of the middle ground, the grey area, the limbo land, the space between, etc. Etc. When an unexpected turn in an important relationship transpired, I felt thrust back into that space in between. One moment the world finally made more sense. The darkness abated, and the light shone out a bit brighter. The fears and anxieties dimished while hope and joy grew. Someone finally chose me and accepted me as I was. Then life shifted course yet again.

Yes, I trust in God. But saying I trust in God and trusting God are two separate concepts. I’m practicing the latter.

When discerning my vocation, I always felt in “the space between.” As an elementary school child, the obvious vocational path to the outside world was religious life. I spent time at convents and with dynamic religious sisters. But I knew from an early age, no religious order would accept me with my chronic physical health conditions. I spent quality time around religious orders because I recognized the intrinsic beauty and importance of consecrated life regardless of whether that was a viable vocational option for myself.

In my adult life, when religious sisters recruit me for discerning consecrated life, I can smile and laugh with gratitude while thanking them for their kind invitation. Or I ponder quietly and wryly smile when they ask whether I’ve asked God for physical healing. Mhmm.

For similar reasons that would prevent my acceptance into consecrated life, these reasons follow me into dating relationships and the vocation of marriage. These reasons cast an additional layer of gravity on the vocation of marriage and prospect of biological children. At times, I feel at odds against the vocation of marriage too. To find a man, especially an orthodox practing Catholic man with depth of character and virtue, willing to embrace those odds and grow together in love beyond those odds provides a natural filtering method. I’m attempting to sound charitable.

Some may mention the generous single vocational option which I live now. The Spirit still seems to be moving me in a different direction. Jesus, I trust in you.

Today I feel like I’m floating yet again in that space between. The certainites and possibilites of yesterday don’t exist or not in the same manner today. The hope of tomorrow gleams. For now I’ll float on the ocean of God’s mercy. Hoping and trusting the boat will be guided to safe havens no longer adrift in the space between.

Appearences aren’t always indicative of reality. A conversation after Sunday Mass with my friend’s family reminded me of the deceptive nature of appearences. We can exude a reality that doesn’t exist. Easily.

I cringed when she said, “You look great!” People need to understand appearances can be deceiving. A smile can mask a multitude of ailments. Supernatural joy can hide deep rooted pain and distress. We are masters of distortion for a variety of reasons, usually either selfish or selfless reasons. All the world is our stage and we act out our illusion of control.

For a person with multiple chronic and complex health conditions, acting the part of a healthy character has become an artform, a tool of discretion, a mask of fleeting normalcy, and a shield from narrowmindeness and hurt. This act can come at a heavy price- the double edged sword.

A smile can hide a multitude of ailments. When the doctors banned me from replying I was “okay” to pertinent medical questions, I wasn’t being coy or manipulative. My internal joy of my miraculous pediatric stroke survival trumped any discomfort and uncertainty I faced. Therefore, I was okay in the grand scheme of God’s plan. Maybe I wasn’t medically okay, but I was providentially okay.

Occasionally my loved ones or I haven’t received the medical care we needed in as prompt of a manner because we’ve smiled or laughed in the ER or Urgent Care. I’ve had clinicians diagnose me as a healthy young women when I was only a few hours away from severe metabolic imbalance and potentially cardiac arrest. This is an extreme example that illustrates my point.

Appearances of a person’s physical, mental, and emotional state of being may not be as it seems. I may smile and engage while looking healthy and vivacious in-person. But I may go home and curl up in a fetal position in a cool dark room moments later dead to the outside world for the next week.

I take for granted the fact my parents and immediate family are intuitive and perceptive people. A subtle change of skin tone, subtle change in breathing patterns, a distortion of posture, or the sheen in ones eye can be enough to alert them of a medical concern. Learning the subtleties of the other produces a keen sense of awareness, a responsibility to others wellbeing, and an avenue to break from selfishness.

Strength and defiance of visible weakness can become an extension of pride, a mark of valor, and a mark of extrodinary courage on the battlefield of chronic illness. The real battle is not to loose our ability to feel and express emotions, allow others to serve us in our moments of weakness, and honestly share the reality of our precious lives.

I guess either I need to practice acting ill or others need to practice being perceptive. Or both.

I wonder if how I feel presently about living with the free will choices of another mirrors in any minute capacity how God feels? Except God wouldn’t feel helpless or hopeless because He is the Alpha and Omega. The I AM. But I wonder if God feels a profound sadness and sorrow when He must live with and navigate our detrimental free will choices? If the Gospels indicate anything about God and God’ s love for us, my answer is “Yes.” The Diary of St. Faustina indicates the expansive mercy and pure love yet overwhelming sorrow the Divine Mercy feels towards us too.

A recent situation with a close, dear friend sparked a greater degree of introspection. Pain, heart break, confusion, and anxiety of the unknown and undecided future surfaced. Two people faced with choices. Two people moments before besotted now distant. All the tendencies towards kicking, screaming, pleading, and manipulating still don’t guarantee the desired outcome. Why? Because at the end of all my desire for control or influence, I’m incapable of making the choice for another.

In many ways, my sad scenario mimicks aspects of humanity’s relationship with God. Presented with better and healthier options or even just a different way of living topped with support and grace, we can still reject that reality and chose the opposite or a lesser variation. For all God’s grace and guidance, we can choose “no.” And God isn’t going to kick and scream or manipulate us back into place. That defies our human free will.

Love upholds freedom. If you truly love someone, you allow that person freedom. The free will to choose. This doesn’t include condoning or tolerating bad behavior. If I manipulate the free will choice of another especially for an intended result, I’m no better than enslaving them. Guidance and encouragement are different than manipulation. So I will love and let live. And pray. And hope. And attempt not worrying.

“. . . Chained by your control. There is freedom in surrender. Lay it down, and let it go.” This is a poignant line in Casting Crown’s song “Be Held.” A song with a message that came into my life two years ago.

A recent conversation with one of my best friends prompted this post. Both she and I are facing potentially radical life changes or challenges. The common thread was the idea of being held. Both she and I have been instructed by priests to be held and stop grasping at and controlling life. My priest, a Jesuit on a retreat during the sacrament of confession, further warned me of the dangers of this illusion of control. Sure we make free will choices about what we think, say, or do, but the real ticket items of life are out of our control.

You can be the healthiest and most active person but still experience a health crisis. You can be the most competent driver and still end up in a car accident. You can pray and do all the right things at the right time and still have a crisis of faith. Praying that perfect novena might not get you the spouse you want or deserve in a timely fashion. Grace downpours upon us, but grace doesn’t equal control. Only God has authentic control, I.e.., He is the alpha and omega. Moreover, God isn’t about control. God is about a divine, merciful, and loving plan for us and our world working with our free will choices.

My Jesuit retreat master warned me of the dangers of control. He explained I was chained by could haves, should haves, and would haves. I was playing God. Not only were my two hands chained behind my back, my freedom was becoming more limited and constricted. I was chained by my control, and in the process I had lost an innate and inalienable aspect of my humanity- freedom.

His solution: BE HELD. For any reader who may be scoffing, “dude, that is easy,” either you have achieved a level of sanctity many of us are working on or this concept really hasn’t sunk in or been practiced. Allowing Christ to hold you in complete and utter abandonment like an infant in a parent’s arms is no small feat especially as a modern adult. To back away and tell God, “I can’t handle it. You handle it.” Or “I rely more on you than myself or anyone or anything else.”

Be Held . . . A lifetime of practicing this reality awaits. I look to my neice and nephews as examples running into my arms with arms stretched wide, face joyful, and eyes scrunched closed. Once in my arms, the dead of weigh of their love and trust almost cripple me. I hope and pray that one day I will approach Jesus in this manner.

Fr. Robert Spitzer wrote a book entitled “The Five Pillars of the Spiritual Life.” Contained within the chapter exploring prayer, my former university president suggests certain forms of spontaneous prayer. Every moment of every day is an opportunity for prayer. Particular prayers that ring true recently include “Help me, God!” Or “help!” Or “you take care of it!” God understands and hears our pleas. Intent is more eloquent than words.

Sometimes life feels heavy, very heavy. (Que me humming Heavy.) Sometimes there is no answer but Trust in God. Sometimes there aren’t feelings of consolation. Sometimes life just stinks. Life can feel physically, mentally, emotionally, and spiritually draining. Life can feel like all is too much.

In these moments, like today or the past couple of months, my only advice to myself and others is be honest with God about how you feel and where you’re at. He already knows, but I’m sure He appreciates the honesty. A priest friend posed the question recently of choosing between confessing the sin of anger or another emotion towards God or the sin of being dishonest about how we felt. Oh snap. God deserves respect and Holy fear, but God also deserves honesty and love.

When you feel burdened and crumbling under the weight of life’s challenges, God wants to know how you really feel. And he wants to extend a loving, reassuring hand to support and guide you or I. When you can’t handle life anymore, God can.

Approximately one year ago I wrote an open letter about Creighton NFP outlining my hope, fears, and frustrations. One Year later, I figured I should follow-up.

Dear Creighton Model:

Not only did you totally kick me in the keister, you pushed me to the boundaries of sheer sanity. NFP continues to affirm and heighten my belief that there IS A GOD, and I’m not God.

Wholly smokes! When my system is working in harmony, it’s like the restored, gleaming Sistine Chapel. When my reproductive tract falls into discord, it’s like the Sistine Chapel with loin clothes added and years of grime and gunk covering the paintings. Being a woman is always beautiful, but sometimes that vision is easier to recognize some days rather than others.

Recently that vision has been nigh impossible to decipher. I’ve left a trail of tears and pleas in your wake. I cry out to God all the day long and all the night too begging for His infinite mercy and guidance. Though I resolutely practice and follow your guidelines, I struggle daily. Apparently, there is pain, and then there is PAIN. Who knew hormones were so amazingly powerful and important to the simplest and most complex bodily functions. Who knew you could have low grade infections not for months but for years. Thanks to NFP I learned I have a new breaking point. I learned control is much more elusive concept than before. I’m more broken than even I realized.

Sometimes I’m angry with God and disagree with His plan. As I told a priest friend in confession: “God is asking too much.” Daily I make a commitment to offering my pain, suffering, and frustration for the conversion of sinners and the salvation of souls. If you have to suffer, one might as well suffer well. But suffering well doesn’t make the actual suffering easier just more meaningful.

For those who are quaking in their boots by the above description, every uncertain and frustrating day is worthwhile rather than denying who God created me as a woman. Rejecting and denying having a reproductive tract that can malfunction and become ill like any other system of your body may seem like a good idea, but isn’t. Creighton NFP isn’t limiting but freeing. My heart breaks over the though of countless women and medical professionals denying their bodies and providing only a band-aid solution for serious issues. Only when you’re illuminated through the eyes of God can you see yourself for the breathtaking creation you are.

The most important lesson learned thus far is to see myself as God sees me. Beautiful. Whole. Enough. Fearfully and Wonderfully Made. Made in His Image.

With All My Respect and Admiration,

Hannah

P.S. Please, find and fix something soon. I pray for strength and courage.

“Let your religion be less of a theory and more of a love affair.” G.K. Chesterton

After talking to my beloved I said:

Religion should be a love affair. Faith should be a love affair. We all desire love, but most of us are afraid of the greatest love and love affair we could ever experience. A love that demands all but gives all too. How many times a day do you and I verbalize our love? How many times do we tell Jesus we love him?

Deep in my heart, I know I don’t tell Jesus I love him enough. To a degree falling in love with my Faith is disconcerting. Do I dare give all to gain all? Some days yes and other days no. Usually during the blossoming stages of a serious, intimate relationship or even a mature intimate relationship, you express affection and love in various unabashed manners. What if our faith was more like our love affairs? Well, minus the sinful and ungodly tendencies.

Wisdom comes from an understanding and acceptance of the metaphysical intangibles, i.e., the undefinable and not quantifiable yet concrete truths surrounding us. What is the metaphysical? Meta and physical- beyond the physical. . . love, truth, beauty and faith to name a few. Faith isn’t just a theory filled with facts and figures, but a love affair. Sure religion is comprised of certain standards and divine inspiration/guidance, but at the heart exists a love affair.

Like a simple forehead kiss that sends tingles to your toes, faith should too. Instead of wooing the fake counterfeits present everywhere, why don’t we woo Jesus? A love affair doesn’t mean that all feelings and emotions will evoke rainbows, butterflies, and happy-go-lucky feelings. No, a real love affair withstands the test of time, the bleak and dark feelings and emotions, and the strain of sin while focusing on a profound and lasting joy and life eternal.

Today I read an article on BBC News about a young woman who competes in Beauty Pageants with a rare genetic connective tissue condition known as Ehlers-Danlos syndrome (EDS). An article highlighting a beauty queen with a 25 inch scar down her fused spine was worth a read. This young woman, Victoria Graham, started a charitable organization called “The Medical Zebra Network.” Why?

She explains the network’s name: “In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ‘When you hear hoofbeats, think of horses not zebras.'”So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ‘medical zebras’.

“So we say, ‘Think zebras, because zebras do exist’.”- BBC NEWS

I looked up the authenticity of the history lesson. BBC and she are correct. This was a medical school metaphor. The picture under this portion of the article shows her flexing her bicep with a hefty pick line inserted into her arm. I smiled. For those who don’t know what a pick line is think an IV but an internal IV threaded into your artery, usually with the entry point in your bicep area. This allows direct intravenous access to your artery.

Victoria transferred colleges hoping to find a program that exercised better flexibility and understanding around her medical treatment. She discussed the sad reality of loosing friends “Maybe my illness is something they can’t deal with or put up with,” she says. “I don’t know what the reason is,” or “She also describes having relationships with boyfriends suffer.” God bless she and her family as they navigate the ups and downs of their unique condition.

My best friends and I joke about how doctors should always start with the most bizarre and unlikely diagnosis and work their way down. We aren’t a medical horse diagnosis kind of family but a medical zebra kind of family. Medical Zebras tend to be great people but intimidating too. These people deal daily, hour by hour, with the reality most people avoid daily, hour by hour . . . mortality and suffering.

Like Victoria I have lost friends or acquaintances that couldn’t “deal with” or “put up” with my conditions or treatments. When you’re dealing with intense physical suffering, the emotional and mental slap of having “friends” bail adds that much more to everything. It hurts like heck, but I learned it’s less about myself and more about them. In the end, the situation becomes an opportunity for practicing intense forgiveness and healthy boundaries.

Like Victoria and others with unique medical challenges, my intimate relationships with boyfriends and male interests have “suffered.” There are NO words to describe the experience of having a practicing Catholic Christian man essentially abusing you because of their personal extreme selfishness and issues while blaming your health situation. May God have mercy on their souls. I now look at these moments as divine mercy, but at the time and even now the pain still twinges. I pray that these “practicing Catholic Christian men” who attend conferences and rallies but cringe at the site of suffering will eventually learn to love their families and children as Christ loved the Church by laying down his life. I hope they don’t abandon ship when times get tough, but instead when times get tough the tough get going.

In the meantime between doctors appointments and treatments, medical zebras oddly have a better grasp on joy than most “healthy” people. Yes, most extraordinary circumstances whether health related or not thins out the herd of friends and loved ones. The Trinity, Mother Mary, and the heavenly host never leaves your side but draw even closer in your most trying moments. Yes, people do need to understand how sick or ill a person can be without the symptoms or visuals being obvious.

For example, a former close friend now acquaintance of mine heard through a mutual friend I was on crutches. A debate ensued if my injury was legitimate. A few days later I showed up to a choir concert on crutches and wearing tennis shoes with my dress. My former friend goes, “You really are injured. So and So said you were but I didn’t believe him.” I responded, “Do I need to show up in a body cast for you to believe me?”